Wellcome Centre for Ethics and Humanities, University of Oxford, Oxford, UK
Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, UK.
J Med Ethics. 2021 Oct;47(10):689-696. doi: 10.1136/medethics-2020-106941. Epub 2021 Jan 13.
A rapidly growing proportion of health research uses 'secondary data': data used for purposes other than those for which it was originally collected. Do researchers using secondary data have an obligation to disclose individual research findings to participants? While the importance of this question has been duly recognised in the context of primary research (ie, where data are collected from participants directly), it remains largely unexamined in the context of research using secondary data. In this paper, we critically examine the arguments for a moral obligation to disclose individual research findings in the context of primary research, to determine if they can be applied to secondary research. We conclude that they cannot. We then propose that the nature of the relationship between researchers and participants is what gives rise to particular moral obligations, including the obligation to disclose individual results. We argue that the relationship between researchers and participants in secondary research does not generate an obligation to disclose. However, we also argue that the biobanks or data archives which collect and provide access to secondary data may have such an obligation, depending on the nature of the relationship they establish with participants.
越来越多的健康研究使用“二手数据”：这些数据被用于最初收集目的之外的其他目的。使用二手数据的研究人员是否有义务向参与者披露个体研究结果？虽然这个问题在初级研究（即从参与者那里直接收集数据）的背景下已经得到了适当的认识，但在使用二手数据的研究背景下，它仍然在很大程度上没有得到检验。在本文中，我们批判性地审查了在初级研究背景下披露个体研究结果的道德义务的论点，以确定它们是否适用于二手研究。我们的结论是它们不能。然后，我们提出，研究人员和参与者之间的关系的性质产生了特殊的道德义务，包括披露个体结果的义务。我们认为，在二手研究中，研究人员和参与者之间的关系不会产生披露的义务。然而，我们也认为，收集和提供二手数据的生物库或数据档案可能有这样的义务，这取决于它们与参与者建立的关系的性质。
